Axonal peripheral neuropathy: Finally, a diagnosis!

I just signed up yesterday. Never been on the site before. My original articles came from the medical journal of neurology and the medical journal of cardiology. My doctors gave them to me when I asked for them. The cardiologist did a one month holter monitor test 6 months after my second Covid shot. My heart was all over the place. He referred me to an electrophysiologist who diagnosed me with small fiber neuropathy. I then have had two punch biopsies by my neurologist to verify if I had small fiber neuropathy. It test positive. It has gotten worse and I can’t have a pacemaker due to no electrical system from dead nerves. The electrophsiologist gave me an article saying most people only live 7 years and die in their sleep. Since they are all from the journal of neurology you should be able to ask your neurologist for a copy of them. I am a retired nurse. I would have never taken it had I realized what I would be dealing with. I have just one question is why are the pins and needles so bad at night and not as bad during the day? It seems to help the pain to walk but yet you need sleep.
One of my doctors did a hip injection under anesthesia and over dosed me on ketamine scared me to death. Afraid to sleep. I did not feel anything until last night and it was raging pain. I had hallucinations, out of body experience and felt paralyzed. I could hear but not talk it causes psychosis. I literally thought I had died. It felt like I was suspended in the air like that show where everyone is in a coma. The advertise Ketamine treatments for pain. I hope no one ever gives it to me again. The nurses were laughing calling it the ketamine high and I just laid there crying so scared.

I asked Bard Chat if there was a causal connection between the COVID-19 vaccine and peripheral neuropathy and this is the response ——
‘There is some evidence to suggest that there may be a causal connection between the COVID-19 vaccine and peripheral neuropathy, but more research is needed.
Peripheral neuropathy is a condition that affects the nerves in the hands and feet. It can cause a variety of symptoms, including numbness, tingling, burning, and weakness.
A number of case reports have been published of people developing peripheral neuropathy after receiving the COVID-19 vaccine. However, it is important to note that these are just case reports, and they do not necessarily prove that the vaccine caused the neuropathy.
One large study, published in the journal Neurology in 2022, looked at the risk of peripheral neuropathy after the COVID-19 vaccine in over 1 million people. The study found that the risk of peripheral neuropathy was slightly higher after the vaccine, but the absolute risk was still very low.
Overall, the evidence on a causal connection between the COVID-19 vaccine and peripheral neuropathy is mixed. More research is needed to determine if there is a true association, and if so, how significant it is.
It is important to note that the benefits of the COVID-19 vaccine far outweigh any potential risks. The vaccine is highly effective at preventing serious illness, hospitalization, and death from COVID-19.
If you have any concerns about the COVID-19 vaccine and peripheral neuropathy, please talk to your doctor.”

@artemis1886, while the temporary restriction can be frustrating when trying to share links when you sign up, the temporary hold is to prevent spammers and solicitors from flooding the community with commercial intentions. Here is the article you wanted to share, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9259076/.

I think covid vaccination caused my neuropathy, August 2021 … it’s killing me , I hate it

We are stationed over in Germany. My second shot Jan 31,2021. Less than two months later having bradycardia and tachycardi. Flew back to Texas to find out what was happening. Cardiologist did a one month holter monitor test showing my heart jumping back and forth. Sent to an electrophysiologist diagnosed with cardiac autonomic neuropathy. Cardiologist said it is a very common problem that he recommended that I never take another Covid shot that they had seen a lot of people having these problems. The government was not up front about two years ago there was a scandal in the news about military cover up about the side effects of the Covid shots. There was supposed to be a congressional committee but it magically disappeared when Biden came into office so not sure what happened to it.

Hello @artemis1886, @cantab and @danieldcassidy. I would like to invite you to a more in-depth discussion on COVID vaccines and neuropathy titled, "COVID vaccines and neuropathy" - https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/. It is an ongoing discussion about the research, and the need for more research, about COVID vaccines and possible links to neuropathy flares or new diagnoses.

Now, back to axonal peripheral neuropathy. @cantab, you mentioned dealing with spinal stenosis and axonal neuropathy, how are you currently doing and managing your pain?

@rowun4 posed a great question on asking for suggestions on how to restructure and finding meaningful activities when one is robbed of the things they enjoyed before their diagnosis. @rowun4, how are you currently doing and have you found any new activities or interests that align more with your current well-being?

I am now starting Cymbalta and it seems to be helping. It was prescribed for me by a pain specialist on staff. But I just sent a note to him since he started me on a low dosage, that I probably need to have the dosage raised since I’m getting the pain when I go up stairs or longer walks.

I’m not doing much, if anything. I’m a female veteran in an area with only a handful. So, nothing there. My neuropathy prevents me from driving or walking very far. This group is the first thing I’ve done in years, socially. I’m having respiratory issues right now.(since April) So that contributes.
I honestly didn’t know that there was anything or any trustworthy groups out there.

Oops.. handful of female veterans. Hard to find.

Hello!

I’m the fellow who created this topic over 15 months ago. I had just received my diagnosis at the time. Frankly, I knew practically nothing about my disease. Since then, thanks to others here at Connect and further meetings with my neurologist, I now know a lot more. Perhaps I shouldn’t say “a lot;” there is so much I could still learn. If you are looking for good, credible information, I would encourage you to visit the Foundation for Peripheral Neuropathy website FPN’s YouTube channel (where you’ll find a bumper crop of informative webinars).

As many who’ve read my posts already know, I had to give up live performance because of my PN. Since my teens, I’d made my living as an actor (I’m now 78). The last play I did was two years ago. My balance was becoming more and more of a problem. I recall asking the set designer if he would equip any steps he might be planning with good, sturdy handrails, and later in rehearsals asking one of my fellow actors if she would “keep an eye on me” in case I showed signs of being about to fall. I’d never before in my career made such requests, and so I decided to retire. To compensate, I’m now doing voice work, which I’m able to do from here at home. Voice work is satisfying, but I’d be lying if I said it was as satisfying as performing. It’s not. But, like all of us with PN and “lost” activities, we need to find “replacements.” It’s vital if we’ve any chance of keeping our spirits up.

I’d love to hear from others about what they’ve “lost” and what they’ve found for “replacement” activities.

Ray (@ray666)